The life and stories of a cancer ninja
He climbed onto his brother’s bike, said he could do it without help, and rode away down the sidewalk. Chase –once watched anxiously to see if he’d ever walk and talk after major brain surgery– rode a big kid bike today!
The determination of this child never ceases to amaze me.
Moment by moment.
Monday morning~
On our way to Chase’s 18-month post-radiation appointment. 18 whole months since he last whispered “I’m so brave…” and we wondered if this treatment would work and if the cancer would ever clear from his spine.
As we drove, he stared out the car window into the cloudy morning and said: “Mom, one day, I’ll be as tall and strong as the trees.“
We had a precious morning with these people who were only meant to oversee his care, but became dear friends instead. Rejoicing in the life given…
…moment by moment.
It’s so beautiful how the small mercies are everywhere.
Chase had an incredibly early surgery time which allowed us to avoid traffic (as much as you ever can avoid traffic in Chicago…on a Friday…during construction season…)
The anesthesiologist on duty today has worked with Chase multiple times and knows his preferences well. In fact, this doctor was the same doctor who administered anesthesia on Chase’s final day of radiation (December 12, 2012) and he still remembered Chase and the party at the radiation center. This doctor always carries a mini iPad with him to distract children going into the OR which meant Chase was so busy playing “Fruit Niinja” that he barely noticed us as we parted. (This is what we want, right?)
The surgeon assigned to Chase was actually one of the few at Lurie who hasn’t placed a central line for Chase. Okay, maybe that’s a slight exaggeration, but when the doctor walked into the room and said “I see that several of my colleagues have worked with Chase…”, suffice to say Chase’s central line history preceded him. He told us that there can be complications to removing a port – like the tube being stuck in the muscle – but today, there were none.
Chase’s oxygen saturation levels dropped slightly after surgery, but he remained stable (with a little help from the oxygen mask) and awoke well.
The peripheral IV (which has always been placed in his thin-skinned, often bruised arms) was placed in his foot – making it that much easier to remove and giving his arms a break.
And when he sat up to leave in recovery, he placed a hand across his chest -as if to both protect and feel the change-, looked at Bob and me, and said: “I’m free!”
At last.
Goodbye, dear port. We’ll miss you, but not really…
![The port itself [photo credit: Dr. Anthony Chin]](https://i0.wp.com/efamily.brevis.me/wp-content/uploads/2014/06/IMG_2906.jpg)
Moment by moment.
“The general protocol is that after six months of clear scans, we remove the port. …even for the ATRT kids. And as I look at Chase, I don’t see any reason to make an exception.”
We took a moment to absorb the words our attending doctor was speaking. Even with the concern of relapse and all that comes with an ATRT diagnosis, the port could and should be removed.
This small piece of foreign material currently embedded in Chase’s chest has somehow come to both symbolize and encapsulate the last two years. It was the first thing in and will be the last thing out. We’ve had it placed, and replaced…and re-replaced again…and again. We’ve fought to keep it, repair it, and protect it. We became trained and comfortable in the procedures to sterilize it and triage when there was a problem. It was a picture of the need for chemo, yes, but it also provided life-lines of blood, platelets, fluids, medicines, and even nourishment when he could not eat.
His access has at times been on both sides of his chest and in both arms as well. It’s been a double lumen Broviac Hickman, a PICC, and a port. It has inexplicably infected multiple times, been infiltrated by a deadly chemo, cracked and broken and once, even slipped out as he turned in his sleep.
Chase’s first and shortest Broviac was placed on August 16, 2012 when he was only 2 years old. He doesn’t remember a time in his life when he didn’t have either tubes coming out of his body or an access point for the tubes embedded under his skin. In it’s own way, it’s become part of his body and his identity, so when he was told that it was to be removed, he became very angry and questioned whether the doctors were going to remove his skin and bones as well – so much is this small device a part of him.
This constant access to his body was in some ways the craziest complication of his treatment months, yet a complete blessing too. But now it’s time for the last remnant of the chemo chapter that can be removed to be separated from his body. No more flushing it and locking it to keep it clean. No more crash kit with clamps, swabs, and gloves in a bag that goes everywhere Chase does. No more ER fever guidelines. When he goes in for MRIs or labs, he’ll require a peripheral IV…just like a “normal” child. A scary and wonderful thought.
He has equally fought it and protected it, and tomorrow, Friday, June 13, he’ll go into an operating one more time and they’ll open his chest and cut it out of the muscles into which it has been so carefully sewn.
We so appreciate your prayer as Chase undergoes this surgery and as we close this chapter. An oddly bittersweet… moment by moment.
“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9 [Chase’s favorite verse to say -often again and again- before he goes into surgery]
The cold snapped in the air as the sun shone distant and too bright through the windshield of the car as we traveled along the road. Chase’s first day of therapies. A new building, new people, new things to be learned…the start of a new chapter. And with the new, came the old and familiar: the fear of the unknown and the question – what lies ahead? Always that question.
Chase’s high voice pierced the questions gripping my mind like my hands holding the steering wheel. 
“Mommy? Where are we? This is not the road to my hospital.” For this is how Chase tells direction. There is the road that leads to his hospital and then there is every other road ever made. I answered and assured him that this road was a good road and that it was the way to his new therapy – therapy that would help him grow strong.
Silence followed for a brief second as he processed what he’d heard. Then; “But Mom, are we late?”
“No, Chase. We aren’t late. We are right on time.”
Another moment of silence, then his voice again, this time with anger, “But Mom, this isn’t the road and we’re late!”
Steeling myself for the familiar exercise of reasoning with the irrational; I responded: “Chase, this is the road and we are not late.” I received nothing but an angry growl and the reiteration that I was in error.
How many times would I need to speak truth to him before he heard?
Finally, this; “Chase, do you trust me? I know this road and I can see the clock. I know where we’re going and I know that we’re not late. You don’t know this road, but I do. I’ve driven on it before and I know where it goes. Chase, you’ll just have to trust me.”
The petulant retort; “Mom, I can’t trust you because I cannot see the road and I cannot see the clock. You can; but I cannot.”
Suddenly, his voice was mine….mine to my Creator who speaks truth to me and calms the questions and fears at every turn. He tells me that even though I don’t know the road, He does. He knows where it goes and what’s along the way. He knows the timing of it and how it will take me to places that will be hard but will make me stronger. And I sit, petulant child that I am, and question trusting Him because I don’t know what He knows and somehow, in my small heart and mind, that makes Him seem less good and my fears seem more justified.
In that moment, that silly short moment of driving across the city, in the child voice from the back seat, I was reminded how good He is to me and that I don’t have to know what lies ahead to trust and follow.
Moment by moment.
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11
